Hello everyone!
Over the past year I have been experiencing episodes of what I believe is reduced muscle tone / feelings of weakness. It feels as if my legs and arms get heavy, holding my head up for just a few seconds becomes painful due to the strain that the muscles are taking on, my muscles often feel sore as if they are about to cramp. One of the scariest things about this though is when it is really bad it can impact my breathing. It feels as if the muscles in my chest area 'sink' and flop downwards too much, as if they are sagging. I have to sit at an angle where the muscles are pulled taunt to relieve this. I get very lightheaded when it impacts my breathing and have to spend a lot of time in bed. Another way I deal with it is I lay on the trampoline in my garden. It sits at an angle so it is not completely flat. If I lay on it at the angle where my head is slightly closer to the ground, I can breathe better as my muscles don't feel as if they are 'sagging' so much.
I have also learnt other ways to cope with and manage the challenges that arise from the feelings of weakness / reduced muscle tone that I experience.
Some people would think that is you have weakness like this, then you just need more exercise. This is an extremely bad idea for me. Just brushing my hair can lead to exhaustion and physical activity actually worsens my weakness. Just speaking too much and too fast can lead to days of needing to recover as I struggle to breathe properly. I have to take things slowly and take care of myself, regardless of what anyone thinks (that includes certain doctors). We need to do what we know is best for us.
1) I have learnt not to hate myself for it. When I fist started to experience this, it was pretty severe. I felt like people would see me as lazy, and I felt quite lazy myself. However I was told that seeing myself as lazy because I have this symptom is like saying a person in a wheelchair is lazy for not walking. It is a symptom and not something I can control. I have learnt to pace. I do things at a slower rate than most people, but that is okay, as most people don't have these feelings of weakness / reduced tone like I do.
2) Neck pillows are a savior. Holding my head up when my neck is weak can cause a lot of pain and lead to horrible headaches, so my head often flops to the side. Using a neck pillow gives my head something to lean on so it isn't as painful. I use a pretty firm memory foam neck pillow.
3) Distraction. If I have pushed myself too far (which I shouldn't) then I may get a head ache and neck pain. I also experience feelings of nausea a lot so distraction sometimes helps me with this as well. To distract me and help me sleep at night on difficult days, I like to listen to a podcast called 'My Voices Have Tourette's' or listen to YouTube Videos in the background.
4) Cancelling Plans. This is necessary sometimes. I have to reschedule things when I'm not feeling well enough to do them and when I know that pushing myself will likely make my symptoms worse. This can be frustrating, but I have to remind myself that it is not my fault and that it is important to take care of myself.
5) Letting Myself Sleep As Much As I Need To Do So. Dealing with reduced tone / feelings of weakness can be utterly exhausting. When it is bad I need to sleep a lot more than the average person, and this is okay because it helps me feel better and be more productive after. My brain and body do not work in the way in which most people's do, so I don't need to live in a way which most of society expects me to if it harms me.
6. Eating When I Need To Eat. My feelings of weakness / low tone get so much worse when I am hungry and often improve after I have eaten. I need to take care of myself and remind myself to eat when I need to eat.
7. Accommodating myself through furniture changes. I used to sit on a stool to work or film my videos, however I cannot do that anymore as sitting up without leaning on anything makes me tired, worsens my weakness, and can be painful. This is why I managed to get a new chair which is a gamers chair with a long back to it, this is what I use now and it is much more suitable for me.
8. Having Baths. Interestingly, baths really help me. The water and Epsom salts I often use can soothe any sore muscles, and when I get out of the bath my muscles work so much better! Once I am out the water I get a lot of relief. I actually wonder if this is anything to do with the cold exposure. When you get out of the bath, you often feel cold because of the air hitting your skin and the contrast between the temperature of the bath vs the temperature of the room. Due to my symptoms getting better when I get out of bath, I wonder if it is more to do with the temperature than the water itself. Sometimes when I have weakness in my chest area, I will splash some water on myself there and it will temporarily help the muscles work normally again. I do experience issues with feeling overheated as well, and my nausea often gets better when I am out in the cool, so I do wonder if that plays a role.
9. Finding alternative ways of earning an income. My symptoms are very unpredictable, but for a long time now, these feelings of weakness / reduced tone have been my most disabling issue. I cannot work a typical job due to this, on days it is really bad I sometimes have to stay in bed most of the day. I can't seem to work the typical amount of hours that most people work, I need a very flexible schedule. Due to this, I work on multiple 'side jobs' - on good days I work on my Ticcers Unite YouTube channel and have a Buy Me A Coffee Page so that people can help me financially if they like my work, I have also been starting a design job (which I haven't earnt money from yet but a business may be started from the design work.) I am lucky that I do not have a set schedule for this, if I am not feeling well I can start working very late in the day or take some time off and come back to it the next day. This is inconvenient but due to me not having a set employer or schedule it helps me as I need this level of flexibility otherwise I would be unable to work altogether now. I may also apply for PIP (Personal Independence Payment) soon, which should help.
10. Being Able To Explain My Symptoms To Others. On bad days I struggle to walk far distances so I don't go out then. On days where it is bad but not terrible I may sometimes see a friend, but my feelings of muscle weakness / low tone are visible to those around me as I may flop my head to the side, lay down outside (I've done that on a ping pong table) and need to lean on things to sit up with minimal discomfort. Due to it being visible I have had to learn how to explain it to others, and have the confidence to do that.
So here are the ways which I manage these feelings of reduced muscle tone / weakness. I'm not sure exactly what causes these issues for me, but I have spoken to people with PANS who have episodes of reduced muscle tone. I do wish for healing, for this weakness to go away, but for now I have learnt to live with it.
These methods which work for me are simply what work for me and everyone will be different, especially if the cause of their weakness / low tone is different to mine. Therefore, this is NOT medical advice, but just me sharing my experience for awareness purposes and for those who have similar experiences to feel less alone.
